Monday, January 26, 2015

My Child Has A British Accent?

So much has happened over the last few months. Everything has been the whirlwind! The hubs has been back and forth on deployments and TDY's. I think he's been gone more than he's been home in the last few months. It's the first time L has really noticed or could verbalize that daddy isn't here.  I just keep telling him daddy is at work and will be home in lots of sleeps.  I think he's starting to understand but who knows. This is the kid who is now repeating everything and starting to talk...with a British accent.  The British  accent is cool and everything, but um...we live in America, in the south. I always expected them to have a but of a southern drawl, but never a British accent.  Thanks Peppa Pig! More power to you little man! We tried to Skype with the hubs and L wanted nothing to do with it.  G loves skyping, not necessarily to see his daddy, but to see himself and make funny faces!

The boys are doing so well in school! We are so grateful for the Prek EC program they are in.  They still have a ways to go, but have made so much progress. Like I said, L is talking up a storm, he will normally say the same thing over and over until you repeat it too.  It can get frustrating at times, but I'm still in that "OMG! MY BABY IS TALKING!" phase!  G is still pretty much nonverbal, BUT has started saying a few words! He has this tiny little voice and a little lisp when he speaks and said in his tiny G voice, "dinosaur, roar!' I just about fell over as it was the cutest thing I've ever heard. He also said "more" because he wanted more yogurt and I wouldn't give it to him unless he used a word, pecs card or pointing.  He finally got frustrated enough to yell out "more!" There you go kid, I knew you had it in you! He's even been trying to master eating with a spoon.  He still prefers to use his fingers, but I get it, eating with your hands is so much more fun! I just like to call it sensory play. L is doing pretty well using a spoon, but is going through that "YUCK" phase lately where even his preferred foods are "YUCK!" The kid turned down a cookie!  Who does that?  I sure haven't met a cookie I could turn down.  Well, that's not true. If it has nuts, I say no.  I'd rather not die because of my love of cookies.

I took the boys to a train show the other weekend.  L had a bit of a rough time with all of the noise and commotion, but G was in heaven!  I think the only thing that boys loves more then trains is eating goldfish. He loved seeing all the trains and going on a little Thomas The Train ride.  L thought it was for the birds and was more excited that he got to drink pink, which was a strawberry banana smoothie.

Next month they both need surgery...again. What else is new, right?  On to our third set of tubes.  They're getting T-Tubes this time which are supposed to last a few years.  Hopefully they do the trick. The poor kids are miserable. L has been hitting himself in the head more then usual because his ears are really bothering him.  He also has a lot of scar tissue in his ears which the need to work on. Even one of the dogs has an ear infection right now!  Too bad they don't make tubes for dogs.  Trust me, I asked our vet!

As for me, I still always feel like everything is chaos. By the time I get the boys from school, take them to therapy, and get them home, feed them dinner, get them in the tub, get everyone in bed I'm too tired to do much of anything.  I have started jogging again, which I am loving! The dogs are loving it too. It helps me clear my head. I'm still in this odd place of not feeling like our family really first in anywhere.  It's like we're stuck between this typical world and the special needs world. Sometimes I forget just how much we're untypical (is that even a word?) until we go somewhere with our typical friends.  After a few minutes, we're like "Oh right, why did we attempt to do this?" It normally ends with either the boys or I crying and we hightail out. The hubs and I would love to move our family to the coast. We found an amazing quaint little town that would be perfect for us, and their schools have a great EC program, but then the hubs would need a job. Details, details. I'm pretty sure we'll be here for a long, long time, but a girl can dream.

Monday, November 3, 2014

Just Another Day in....Paraidse?

Today started out like any other morning.  My alarm going off in my ear at 5am.  Why 5am?  That way I can shower, put my face on and get dressed before the twinadoes demand breakfast.  On some morning's G wakes me up well before 5am, ready to start his day.

We do our usual, change diapers, get them dressed, feed them breakfast, break up some pre-school fights which are normally over something life shattering like someone has the wrong cup or L stole something from G, administer medications, put everyone's shoes on, and we're out the door.  At least we try to be.  On a normal day, first I bring L to the car, then G to the car, then have to run back in to grab backpacks (an essential folder holder for any preschooler)and grab my coffee, chugging it on the way to school all while trying not to spill it down the front of my shirt, while L is in the back yelling "OH NO!" because he intentionally took his shoes off and then cries because he doesn't have his shoes on, while G is either shrieking, flapping, crying or eating his fingers.

Although it takes us 15 minutes to get everyone in the car, we get to school in 8 minutes, 9 if the older woman with bright white hair is walking her bazillion dogs (I think they are really walking her), so we have to stop so we don't hit her or one of the bazillion dogs. We finally get to school, thank goodness the handicap spot it open (I'm always amazed at how many non handicapped people park a school...for kids with disabilities.), which also happens to be the furthest spot from the doors (still makes me confused every morning). I get L out of the car, he fights with me because he wants to take the entire contents of the car into school with him and I tell him he can't so he cries.  He gets over it and gets out of the car.  Then he wants me to carry him, so I carry him to the other side of the car to get G out.  G is crying, like he does every morning when we make the turn into school, I try getting him out of the car while being hit. kicked and yelled at.  Finally get him out, all of us walk towards the school, G throws himself on the ground and refuses to walk, all while trying to lick the car in front of him (gross!).  Pick him up and carry said child, other child notices and wants to be carried too.  Finally make it to the doors while carrying about 40 pounds in each arm, plus 2 backpaks while they're both flailing like fish out of water. 

We finally make it in the building.  L runs to his classroom, G throws himself on the ground. It takes the Principle, myself and one of the TA's to get him to go into the classroom.  Once in the classroom, L runs in circles, G throws himself back on the floor while being bribed to wash his hands so he can eat his banana.  Put his harness vest on him, wash his hands, seat belt him into special chair, eats banana in 2.3 seconds and then reads a book.  I end up sweating my make off, and my good hair day turns into the drowned rat look, eyeliner smudged on my face and ready for a nap.  I start what should be my 8 minutes drive home, but realize I have to run errands, looking like I just got out of a sauna when it's really only 40 degrees out.  Once I see our neighborhood and our cute house sitting on the corner, I feel like the gates of heaven just opened and I run in wanting to collapse on the couch, but realize there are two furry beasts begging me to take them on a walk.  Ah...and it's only Monday.

Friday, October 10, 2014

Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else...please go away.....

Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with,

Please go away, just for a month, week, day, oh heck, I'll even take an hour!  Don't get me wrong, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, you have made my children into the strong, amazing, artistic, little human beings who are full of love and giggles. 

That doesn't mean that I don't ever think about what they would be like if they were just typical little boys with typical little friends in a typical little school, eating typical little human food without, on typical little playgrounds playing with typical playground equipment all while convulsing, shaking, screeching, kicking, hitting, throwing things, throwing themselves, meltdowns that last hours over nothing at all,  hives, and all that other fun stuff we deal with on a day to day basis. 

We love all of our therapists and wouldn't change them for the world, they have become friends, family and show their true love and dedication to G&L...that doesn't mean we haven't dreamt (is that even a real word?) of a life with no therapy, running to specialists, blood labs, special needs equipment appointments, etc. My biggest decision used to be which shoes to wear or which shirt my boobs looked better in.  Now I have to make decisions everyday that affect G&L's entire life.  The Hubs and I always joke around that G might live in our basement one day so we need to move into a house with a basement.  We joke about it  because we realize it could very well be our reality one day.  

While we're on it?  Why do I keep saying typical and not normal?  My kids ARE normal.  Normal for them, and normal to us.  What is normal?  Everyone has their own sense of normal.  What's normal for my life, isn't he next persons normal. It's normal for me to want to wear hot pink and leopard print, it's normal for my friend JSM to wear all back, it's normal for my friend GWB to have red hair, It's normal for my friend JAN to have curly hair.  Autism and everything else is our normal, but sometimes it would be nice to have someone else's normal for a month, week, day or an hour.

So, like I was saying, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, has made our boys who they are, but I often wonder who they would be if the world didn't consider them as little boys with special needs, but typical little boys who have lots of love, giggles and smiles to share.

One exhausted mama

Thursday, September 25, 2014

I've Been A Bad, Bad Blogger

I just noticed after a friend pointed it out, that this is my one year blog anniversary.  My last post was May 8th. I didn't forget about my blog, life took over. The Hubs has been deployed, the boys have turned into three year olds, who may I add everyone warns you about the terrible two' one ever warns you about the terrorsit threes!!!  Good Lord these boys are testing my patience. 

A little update...OK, so it will be a long update. G&L were in summer school all summer. It was only half day, but it was better than nothing.  It helped them stay in the groove of school.  We also took them to the beach, Sea World and some local places.  They LOVED the beach!  The hubs and I got to go away for the night and headed to the coast.  We fell in love with a little beach town and are trying to make it our mission to move there.  Surprisingly for a little beach town they have some amazing Autism resources and special programs for the boys, which besides the hubs having a job, is our top priority.

The new school year has been off to a great start.  The boys are doing well and love their teachers.  Two of them are the same teachers from last year, which I think has helped with their transition.  L has become a talking MACHINE!  One day he came up to me and said out of the blue, "Hiya Mama!"  I about fell over!  A lot of his speech is repeating what he hears, and then then turns it into his own sentence, but I'll take it! Sensory wise, he still has issues but we've seen so much improvement!  We just switched to a new OT, so fingers crossed it goes well. L is also a ladies man!  He loves the ladies, young and old.

G has made some progress.  It's been a slow progress, but progress is progress in my book!  He now knows most of his animals and the sounds that go with them.  He's definitely become a stubborn little boy!  I think his stubbornness and drive to want to do things on his own more and more, will help in the long run. He's a boy who knows what he wants and goes after it, or throws himself on the floor and screams til we can figure out what he's after so we can help him.  He still has his basic food group of cream cheese, goldfish crackers, banana's, grapes and blueberries. 

Both boys have started horse therapy!  G jumped on the horse like he's been doing it his entire know, all three years of it.  L was a little but more apprehensive but once he was on there he was loving it!  I was so proud of both of them for trying something new.  The hardest part was trying to get them to wear the riding helmets.  After we won that battle it was smooth sailing. Here they are on their horses!

Although I normally keep this blog about the boys, I just have to share that this mama bear just learned how to shoot a gun, so watch out!  I was terrified at first, I had never even touched a gun!  Thanks to my awesome friend M and a nice man at the range, they both made me confident enough to try it.  I seriously loved it!  It was empowering just to know, that I could do it, and it wasn't as terrifying as I thought it would be.  Do I want a gun in the house? No.  I'm not ready for that, I don't know if I ever will be, but at least I know I'm not scared of them anymore, and I know how to handle one.
                                                                        That's Me!
                                                         (Real women shoot in flip flops!)

My goal for the next few months, for all three of my bloggers fans, (Hi Mom, Dad and Sissypants) is too try to keep up with this thing.  I started it for a reason, and I hate that I let it go.  Gotta follow through Yo!

Thursday, May 8, 2014

By Far, The Best Mother's Day EVER!

With Mother's Day approaching this weekend, I've been pretty bummed that the hubs won't be home for it, but today, the boys gave me the best Mother's Day (a bit early) ever!  I always dreamed of having a fridge full of artwork and a slew of art projects around the house that I always wanted to do with my kids.  When we struggled with infertility, I was afraid my dream my never come true.  Then when we had the boys I  had grand ideas of all the things I was going to do with them.  Then, Autism hit.  All the projects I had planned never turned out or there would be a meltdown due to mess hands or not understanding what to do.

Today when I picked they boys up from school the teacher handed me birdhouses the boys had painted, hand prints and a pictures they drew all in a cute foam frame.  The teacher told me she knows it's not as fancy as other classes but they do projects based on their skills.  It could have been a piece of paper with a line on it and I would have been happy.  Right now I have a fridge full of crazy drawings and finger paintings with two little bird houses sitting on my windowsill.  I've always wanted jewelry, vacations and the big things for gifts (just ask the hubs), but this right here is what it's all about.  As I sit and stare at it, I'm just amazed, that my two little amazing boys did this.  The boys that just a few months ago would have a 3 hour melt down if something got on their hands, or they fell, or got dirty.  Even though we have so many hard, challenging days, it's things like this that make it all worth it.  The Dr.'s, the therapies, the tears, it's worth every second for moments like this. This right here is what it's all about. 

Sunday, May 4, 2014

The Day I Realized I Can't Do It On My Own

I think as parents, regardless if your children have Autism or some other disability, you have that one point where you think you just can't go on for another minute.  I"m currently the VP of our local Mom of Multiples group, which has allowed me to meet so many strong, amazing women, that I otherwise may not have met.  There are many members in our group who serve in the military or have a spouse in the military, leaving us to often running the household on our own very often.

While talking to a friend this evening from the multiples group, we were sharing things we do to make it through.  I used to be the, "No, I don't want or need any help," person. Now I'm the, "YES!! Please help me person!"  I've finally started to admit to others that I have a secret.  Reguardless what others think, I am not super woman.  I'm damn tired.  G&L hardly sleep, they scream yell, meltdown and make me question my sanity.  I remembered the first time I realized I need to say, "Yes, I'll take your help."

Last summer I signed the boys up for a gymnastics class with some other friends.  I don't know what made me think this would be the best thing ever.  I have to say it was 99% awful!  L would run in circles and then go back to screaming, sometimes crying, G would either hide in a tunnel somewhere or hang on the door trying to leave.  Then there was that one day.  We got there a little early (big mistake) the boys didn't and still don't understand the concept of waiting, so they were screaming and crying and hitting me because I wouldn't let them run a muck while the other class was still going on.  I literately sat down in the middle of the gym, in front of complete strangers and just started crying. I couldn't keep it in. I tried.  The boys were just diagnosed with Autism, the hubs was deployed and I just wanted to hit the pause button.  What started out as teary eyes, turned into the ugly cry right there, in front of a bunch of moms and two years olds that I didn't know.  One sweet mom came up to me and said, "It's OK, we all have these days."  It was that day, that I decided if someone asks me if I need help, and I do, I will swallow my pride and accept it.  Once I made that deal with myself things got a little easier.  Autism is a Bitch. If people want to help to make our lives a little better or just offer some kind words, who am I to stop them.  I sometimes still say, "No Thank You" but then regret it minutes later while I have two children throwing themselves on the sidewalk having a meltdown.  Today a friend picked up some diapers for me.  Although it may not seem huge to some, G&L were having a horrible stimming day today, and the thought of bringing them in public to get stared at and play 20 questions with strangers wasn't my idea of fun. A saved the day by bring diapers and goldfish!

My point is, as parents I think we often want everyone to think we can do it all, that we are unstoppable.  Well, I'll tell you what this mama, knows she can't do it all alone, but she can do it with the help of her awesome friends.

This Showed Up in My Time Hop Today.

I had forgotten all about the first time I read the poem, "Welcome To Holland."  It describes so well what I was feeling at the time, and still am.  I thought I would share it here.

Welcome to Holland
Written by Emily Perl Kingsley (in 1987)

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.